Bladder Clinic features in Daily Mail artcile about male cystitis

"The 'prostate problems' that could actually turn out to be male cystitis" By Alice Grebot

(Daily Mail, Tuesday 16th November 2009).
 

There didn't seem to be a reason for it, so for several months Alan Troman put up with it.
But when he started suffering from urine retention, he started to worry.

'The first time it was really noticeable was when I was on a skiing holiday in France and stopped at a bar to go to the lavatory,' says Alan, a 69-year-old retired consulting engineer from the West Midlands.
'When I tried to urinate, I couldn't. That inability only lasted a couple of minutes to begin with, but when you've always been able to go as and when you want, it's very worrying.'

When Alan returned home a few days later, he saw his GP, who suspected it might be something to do with his prostate. This is the gland surrounding the tube that carries urine from the bladder to the penis and, as men age, it often enlarges, causing symptoms such as a frequent need to urinate but difficulty starting urination.

Yet far from being a solution to his problem, this diagnosis marked the beginning of a four-year period of regular GP and hospital visits, tests and medicines as doctors tried to work out the real problem.During this time, his life was blighted by pain, which affected his relationship with his wife Vivienne, 68, and even his ability to work

'The sharp, stabbing pains in my abdomen and bladder gradually built up until the pain was virtually constant,' he recalls. 
'The urge to urinate got worse and worse, as did the retention.

'At my lowest point, I found myself in a shop toilet for four hours trying to urinate. It was agony. And when I did go, it felt like I was urinating razor blades.' Not until May 2006 was Alan finally given the diagnosis - and treatment - he so desperately needed, for a little-known condition called painful bladder syndrome (also known as interstitial cystitis). 
This is different from the more common cystitis, which often affects women and is caused by bacteria which respond to conventional antibiotic treatment.

As many as 400,000 people (ten per cent of them men) in the UK are thought to have the condition (commonly referred to as PBS/IC), mainly those between the ages of 20 to 50, according to the Cystitis and Overactive Bladder Foundation.

'Unfortunately, there is limited awareness of painful bladder syndrome/ interstitial cystitis in the medical world - and doctors simply don't think of men suffering from it,' says Mr Zaki Almallah, consultant urologist at Birmingham and Solihull Bladder Clinic.

'Some men can go for years without a diagnosis.'This isn't helped by the fact that other conditions present with similar symptoms, including bladder cancer and prostate disease, so misdiagnosis and unnecessary treatment in men is extremely common.''We don't know the exact cause of the condition, partly because of the lack of research and funding".

'The most acceptable theory is that it's caused by defects in the glycosaminoglycan layer - the protective layer on the inner lining of the bladder. This allows toxins from the urine, such as potassium, to leak into other layers of the bladder, irritating nerve endings.'

There are also theories about there being a genetic link, or an autoimmune disorder, where the body's own immune system attacks it. Severity and symptoms vary greatly, but the main signs include increased urinary frequency and urgency, and sometimes unbearable pain or discomfort around the bladder, abdominal and back areas.

For Alan, these symptoms became all too familiar.
'I'd wake up as many as 18 times a night with painful spasms, and during the day I couldn't concentrate because of the discomfort,' he says.  'As an engineer, visiting sites became very difficult. 'I felt like I spent most of my time in the bathroom and my condition completely destroyed the physical side of my marriage. Frustratingly, nobody seemed to be able to help.'

When he first saw his GP about the problem, Alan underwent tests for an enlarged prostate.
But although the gland was slightly larger than normal, he was told that was not the problem and was prescribed pain relief. After two further years of pain and worry, Alan was referred to a urologist, who thought he was suffering from overactive bladder syndrome, which is similar to PBS/IC, but without the chronic pain. The medication Alan was prescribed for this, not surprisingly, didn't work. And, by this time, his need to use the toilet up to 30 times a day meant that even going shopping had to be carefully planned.

'I always had to ensure there was a toilet close by and took a bottle with me when travelling by car,' he says. 
'Even travelling 40 minutes on the bus from my home in Halesowen to nearby Birmingham involved getting off the bus for at least one - often two - toilet stops, extending the journey to four hours. Our social life was non-existent.'

Later that year, the possibility of PBS/IC was mentioned for the first time - but wasn't diagnosed - after Alan underwent a telescopic examination of his bladder called a cystoscopy, which revealed a patch of abnormality on his bladder lining.

'The urologist said he was sure it was interstitial cystitis, but he wanted to do a biopsy to double check it wasn't anything sinister, like cancer,' says Alan.

Frustratingly for Alan, one scheduled biopsy (three years after he first saw his GP) was cancelled, and, by the time he had the procedure two months later, the urologist had retired. Instead, the new consultant prescribed Alan medicines, including one to treat the symptoms of an enlarged prostate, to no avail.

'By now, unable to travel longdistance, I was barely working and was starting to think I'd have to live with the condition for the rest of my life,' says Alan. Eventually, seven months later, after an 'inconclusive' urodynamics test (which assesses the function of the bladder and flow of urine), Alan was referred to Mr Almallah at a specialist clinic at Queen Elizabeth Hospital, Birmingham.

By this point, he'd had no choice but to have a permanent urinary catheter fitted (a thin tube inserted into the bladder, allowing urine to drain out of it and into a bag). Although it eased his discomfort, having it done and carrying the bag around with him was 'one of the most uncomfortable, horrible experiences', he says.

Mr Almallah persuaded Alan he was able-bodied enough to selfcatheterise using disposable catheters to give him back his freedom. He was also asked to produce flow charts at home for around a month, recording frequency of urination and volume - and given an MRI scan of the pelvis and a video-urodynamics test, in which Xrays of the bladder are also taken.

In May 2006, four years after the symptoms had first appeared, Alan was finally diagnosed PBS/IC.

'That was an amazing moment, having been led down various blind alleys for so long,' he says. 'It gave me such hope.'
Mr Almallah recommended bladder installation therapy, which involves flushing a liquid solution of medicine into the bladder through a catheter.
The liquid remains there for an hour before the patient urinates it out - this works to repair the lining of the bladder to stop the irritation which is causing the pain.

Initially, Alan was given a six-week course of weekly treatment at the clinic, after which appointments became less frequent.
Now, he requires treatment only once every five weeks - soon to be six - and he uses a catheter only on rare occasions. He is also virtually pain-free. Diet also plays a part in the management of the condition and Mr Almallah's advice is to avoid spicy food and anything too acidic, such as cranberry juice. Through the Cystitis and Overactive Bladder Foundation, Alan has also received acupuncture treatment, which has also helped with the pain, he says.

'PBS/IC can really blight men's lives; many live in misery, unaware there is help out there,' says Mr Almallah.
'It's important to increase awareness of this debilitating condition and let people know there is help available.' Alan had all but given up hope before finally being diagnosed correctly. 'I thought I'd hit a brick wall,' he says.

'But after four years of misery and constant discomfort, I'm pretty much pain-free. It's an incredible feeling.'

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